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In April 2004,
following a public consultation by the Department of Health (DH), the government
amended legislation to exclude from free NHS hospital care “anyone who is identified as being in the UK without the proper
authority,” including “failed asylum seekers, whose entitlement to free NHS [care]
ends once their claim (including any appeals) has been finally refused;
overstayers, who entered the UK legitimately but whose visa or entry clearance
is no longer valid..; and illegal entrants who have no entitlement to free NHS
treatment at all.”1

This change in policy was primarily a
response to media and popular concern over ‘health tourism’ – a concept based
on myth not fact – the results of which are now a “public health disaster”
according to Yusef Azad, Director of Policy and Campaigns for the National AIDS
Trust (NAT), which launched a new report, The
Myth of HIV Health Tourism, at last month’s British HIV Association (BHIVA)
Autumn Conference.

By pandering to public
opinion, the government removed access to HIV treatment and care not only from temporary visitors, but also from irregular migrants (also called ‘illegal’,
‘undocumented’ or ‘unauthorised’ migrants – people who are liable to be
deported for issues related to immigration status) – the most vulnerable members of UK society,
inevitably some of whom live with HIV.

In April, the High Court ruled that one ‘class’ of irregular migrants – refused
asylum seekers – should be considered 'ordinarily
resident' and therefore entitled to free NHS treatment, including for HIV. However, a DH appeal against this ruling is
being heard at the Court of Appeal later this month, which may change the rules
again.2

The myth of ‘HIV health tourism’

The NAT report argues that there is no
evidence to demonstrate that ‘HIV health tourism’ to the UK exists.
“Allegations of ‘HIV health tourism’”, says the report, “make a serious charge
against the integrity and truthfulness of many HIV-positive migrants to the UK,
effectively alleging that stated reasons for migration to the UK are at best a
pretext and at worst totally untrue. Given the discrimination and
marginalisation experienced by many migrants we must question very carefully
any claim which might add to social hostility.”

The report also notes, “the claim of health
tourism has been central to the Government’s policy of charging refused asylum
seekers and other migrants without lawful residency status for healthcare. The
Government argues that free NHS care for those without what they deem to be a
legitimate reason to migrate to the UK acts as a ‘pull factor’, encouraging
illegal immigration and discouraging refused asylum seekers from leaving.
Charges for NHS care for certain categories of migrant were introduced to end
the ‘pull’ of free NHS care and address the so-called problem of ‘health
tourism’.

“Is there really evidence of HIV health
tourism which would justify on grounds of immigration policy the singling out
of HIV for NHS charges alone amongst all serious or sexually transmitted
infections?” asks NAT.

Who began the myth of ‘HIV health tourism’?

From the mid-to-late 1990s, the migration
of people from high prevalence countries to the UK began to forever change the
demographics of HIV. This change, alongside increased new HIV diagnoses
acquired in the UK via sex between men and better survival of people previously
diagnosed with HIV due to the advent, in 1996, of potent antiretroviral
therapy, led to genuine concerns within the HIV sector about the lack of
adequate NHS funding for HIV treatment and care.

These concerns hit the mainstream in 2003,
when articles in The Spectator3
and The Daily Telegraph4 began to fan the flame of xenophobic and anti-immigration sentiment,
adding to concerns over limited NHS resources, and fears of foreigners bringing
disease with them and ‘spreading’ it to the UK population. The articles, which
were based purely on conjecture and anecdotal evidence, painted an
inaccurate but compelling picture suggesting that: asylum
seekers are primarily Black African; that most Black Africans are infected with
HIV; that they are already aware of their HIV status;
and are misrepresenting their claims for refugee status or political asylum in
order to access treatment and care which is either not available in their home
country, or which costs more than they can afford.

In fact, the DH,
highlighted in its 2003 ‘changes to NHS charges’ consultation, “much media
coverage [of health tourism] is confused and inaccurate, e.g. concerns about
health care for asylum seekers, who are entitled to necessary hospital care
while their claim and any subsequent appeals are considered.”5

Where is the evidence?

The Department of Health’s main
justifications for amending the
regulations for charging ineligible overseas visitors for hospital care were overburdened health services and inappropriate diversion of
taxpayers’ money. However, these justifications were criticised by the House of
Lords / House of Commons Joint Committee on Human Rights due to a lack of
evidence for either large-scale health tourism or its financial burden on the
NHS.6

Neither the DH, nor
the government, have any reliable data regarding the existence of ‘HIV health
tourism’, nor do they have any evidence that it is a significant burden on the
NHS. In 2005, Melanie Johnson, then Minister for Public
Health, told the Health Select Committee on new developments in HIV/AIDS and
sexual health policy, appointed by the House of Commons to examine the
expenditure, administration, and policy of the DH: “I do not have any figures
to supply you with on this. I concur with the point that it is difficult to
measure it, and we do not have reliable information.”7

In fact the Health Select Committee found
no evidence for ‘allegations of HIV
health tourism’, but rather evidence against
it: “What little evidence exists in this area in fact seems to suggest that HIV
tourism is not taking place. It suggests that HIV-positive migrants do not
access NHS services until their disease is very advanced, usually many months
or even years after their arrival in the UK, which would not be the expected
behaviour of a cynical ‘health tourist’ who had come to this country solely to
access free services.”8

Nevertheless, the government claims that
HIV health tourism does exist, and suggests that it exists in the following
way: HIV-positive migrants wait until they are extremely ill before coming to
the UK and then immediately attend A&E for treatment: "It is precisely
because that kind of immediate access is available that the UK is a popular
destination – people out to abuse the system do not seem to wait for weeks or
months before seeking out services, they do it as soon as possible after they
get here... The Government remains convinced that deliberate abuse of the NHS
by overseas visitors, across a range of services, is not just a potential
threat but a very real one... That applies as much to HIV treatment as to any
other hospital service."9

The new report from NAT provides very
strong evidence that this is not the case. “If migrants travel to the UK
knowing their HIV status with the aim of accessing lifesaving treatment, we
would expect data to reveal that migrants with HIV access tests and/or clinical
care and treatment soon after arrival,” it says. “In fact the opposite is the
case. Recent data from the HPA [Health Protection Agency] supports previous
studies showing that there is a significant amount of time between arrival in
the UK and HIV diagnosis. In 2007, the average time between UK arrival and HIV
diagnosis was almost five years, and this has increased over time – from almost
four years in 2005, and four-and-a-half years in 2006.”10

The
report provides a wealth of evidence to robustly argue that there is no
evidence to demonstrate that ‘HIV health tourism’ is “a significant or real
motivation for migration to the UK” and that there is considerable evidence to
demonstrate otherwise, “in particular the lower rates of HIV prevalence
compared with country of origin, the long average delays between arrival in the
UK and accessing HIV testing and care, and the evidence available on the actual
motivations of migrants coming to the UK.”

“They say you are a health tourist but how can you be a tourist when you have this hanging over your head? You are HIV+, how much worse can it get? If you are from Africa you don’t know anything about medication. All you know is if you are HIV you are dead. How can you even think of jumping on a plane if you think you are going to die? It is expensive to come here, if you are sick you can’t work, you can’t afford it. If you can afford the plane you can afford to buy medication.”

The costs of late diagnosis

Black African migrants are
disproportionately affected by late diagnosis compared with other vulnerable
groups, and evidence strongly suggests that this is not linked to recent
arrival in the UK. In 2006, more than 40% of Black African adults had their HIV
infection diagnosed late, which greatly increased their risk of illness and
death in the short-term.13

A 2006 BHIVA audit of AIDS-related deaths
suggests that some deaths were due to migrants not attempting to access HIV
care because of the perception that they were not eligible. In fact, thirteen
patients who had received a previous positive HIV test had not been under
regular care and re-presented too late for effective treatment. This included
one individual who had not returned to receive the test result.14

So, rather than target the NHS, evidence
suggests that, due to a variety of factors, including language barriers and
fear and misinformation about their rights to use medical resources, migrants
often under-use health services legitimately available to them, and that even
migrants who suspect they might be HIV-positive are not testing or accessing
care for fear that an HIV-positive test may lead to deportation.15

A 2005 review from the pan-London HIV
Consortium found that just 20 people who were not deemed to be eligible were
receiving HIV treatment from the NHS in London.16 So, even if a
small minority of ineligible HIV-positive individuals were accessing HIV
treatment, this would cost a tiny fraction of the NHS budget, as it is
estimated that HIV prevention, treatment and care costs the NHS £440m per year,
less than 1% of the total NHS treatment and care bill.

On the other hand, providing free HIV
treatment and care to everyone in the UK is far more cost-effective than
denying access to certain ineligible individuals. This is because the cost of
treating a neglected condition in an emergency (which the NHS must do,
regardless of the ability to pay) is likely to exceed the cost of preventive or
maintenance treatment. The annual cost of antiretroviral therapy is now less
than £8000; one week’s stay in intensive care can cost more than twice as much.17
There are also important public health benefits – by reducing
infectiousness, HIV treatment greatly reduces the risk of onward transmission,
both sexually, and from a mother to her child.

The impact of the myth

The overall impact of the April 2004
guidance, in terms of cost-savings to the NHS is unknown, as the DH and the government
are not only unable to produce figures regarding the costs of alleged ‘HIV
health tourism’, but are also unable to show that any money has been saved.

Rather, evidence suggests that the costs,
in terms of human health and suffering, have been great. Baroness Gould told
the House of Lords in March 2008 that: “It is clear
that these changes to the regulations are causing serious hardship...These measures
actually prevent vulnerable people, including pregnant women, accessing the
vital treatment that they need because they cannot afford the charges.”18

One of the consequences of the policy
change has been widespread confusion regarding entitlement to care on the part
of healthcare providers, as well as immigrant and refugee communities,
exacerbated by a second DH consultation, issued in May 2004, on changing
entitlement to primary care, which although they have not yet been implemented,
has led to some GP practices excluding eligible patients.19

NAT has compiled a dossier of case studies20
that highlight further problems resulting from the 2004 guidance. It
shows that some people who are entitled to free hospital treatment have had it
mistakenly denied by NHS officials and clinicians confused over the
regulations. Other case studies show the misery and suffering caused by the
regulations: often destitute, those unable to pay upfront have had their
treatment delayed, denied, interrupted or withdrawn. In addition, many
individuals have been aggressively pursued by debt collectors. These, and other
“extremely shocking examples” of the impact of the charging regulations were
reported to the House of Lords and House of Commons Joint Committee on Human
Rights in 2006.21

In addition, the confusion over the
so-called ‘easement’ clause – which allows doctors to provide ‘immediately
necessary treatment’ regardless of the ability to pay – may also have harmed
many HIV-positive migrants, and is somewhat duplicitous: the government is
publicising one message – that ineligible individuals are not entitled to free
HIV treatment although they are entitled to free HIV testing – and obscuring
life-saving information – “that anyone who has already begun treatment,
including HIV treatment, on the understanding that they are entitled to receive
it free of charge must continue to receive that course of treatment free until
it is completed, or they leave the country or are deported. This applies even
if it is established that they are no longer eligible for free treatment or,
indeed, that they never were eligible. This means that there is absolutely no
question of, for example, an asylum seeker who has begun a course of HIV
treatment, suddenly being asked to pay for it to continue because their asylum
application has been turned down.”22

Even then, confusion over the actual
definition of ‘a course of treatment’ has meant that many clinicians had
perceived a pressure to begin their patient on antiretroviral therapy sooner
than necessary so as to avoid having to charge for it in the event that asylum
was denied. Again, the government obfuscated on this, providing a recent
supplementary letter to clinicians clarifying this policy and stating that
‘treatment’ begun prior to the asylum decision does not necessarily mean
antiretroviral therapy, but in fact, can simply mean continued monitoring of
immune and clinical status due to an HIV diagnosis.

Changing public opinion

At last month’s BHIVA conference, a session
on treating migrant populations and their eligibility for care brought into
sharp focus the impact of these policies on HIV treatment and care. NAT’s Yusef
Azad pointed out that, “the problem is asking healthcare workers to do
immigration officers work for them. To use healthcare provision as a lever in
immigration policy, when that immigration policy fails, is a public health
disaster. It is as simple as that,” he said.

Professor Jane Anderson, of Homerton
University Hospital, east London, with a high proportion of HIV-positive
migrants, is acutely aware of the many problems they face. She pointed out the
paradox of one government department, the Department for International
Development committing £6 billion to universal access to HIV treatment and care
overseas,23 but another two government departments, the Department
of Health and the Home Office “denying that care free here and also sending
people back through various legislation and legal decisions to places where
there’s no care. Why can’t we have domestic policies that are the same as
foreign policy?” she asked.

The government’s continued insistence on
the myth of ‘HIV health tourism’ is calculated political populism. Health and
immigration were the two issues of greatest concern before the 2005 election,24
and perpetuating the myth may have won Labour much political capital by
appearing to be tough on refused asylum seekers and protecting the NHS from ”abuse”.
Indeed, the change in legislation featured in the Labour Party’s 2005 election
manifesto.

If public opinion changes, then government
policy may soon follow. Yusef Azad told the conference that he hoped the new
NAT paper, which is primarily aimed at journalists and politicians, might begin
to make a real difference. “I don’t think we should be pessimistic about
changing public opinion and public understanding of what’s going on,” he
concluded.

8. House of Commons Health Committee. 2005.
New Developments in Sexual Health and HIV/AIDS Policy: Third Report of Session
2004–05: Volume 1. http://www.bashh.org/committees/cgc/hsc_report.pdf

9. HM Government. New Developments in
Sexual Health and HIV/AIDS Policy Government response to the Health Select
Committee’s Third Report of Session 2004–2005.
www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4116246

10. National AIDS Trust. The myth of HIV health tourism. October
2008. Available at www.nat.org.uk/document/500

11. ibid.

12. Quoted in Barton J. Challenging the myth of ‘treatment tourism’:
is access to medical treatment for HIV a pull factor in migration to the UK? University of East London, 2004. www.uel.ac.uk/ssmcs/research/fmsc/papers/Barton.pdf
(accessed June 24 2008)

15. Cherfas L. Negotiating access and culture: organizational responses to the
healthcare needs of refugees and asylum seekers living with HIV in the UK. Refugee
Studies Centre Working Paper No 33. October 2006.

Issue 181: November 2008

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends
checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member
of your healthcare team for advice tailored to your situation.